Submission 1968

To whom it may concern

28th May,2006

I am writing due to my deep distress and disappointment about many of the changes being made to the

NDIS, and how these changes are being made. I am also concerned that these changes are being

made by a Labor government who has promised to support the NDIS. It is a great betrayal. I have voted

Labor since I first voted for Gough Whitlam. I continue to vote for the Labor party because I have

believed that it supported my values. In recent years this has been challenged.

I have a son with a severe psychosocial disability. He is now in his fifties and I am in my seventies. I

have been lulled into a false sense of security, believing that the values of the Labor government would

continue to support the NDIS and that my son would have at least a basic level of support by his

familiar NDIS people when I can no long offer him the regular supports that I continue to do.

It is of great concern to me that having gone through a legitimate process of applying for NDIS, my son

may have to go through the entire stressful process again. We were told that once being admitted to the

NDIS that it would be for life. I am quite a bit older now and so it is much more difficult to go through

these anxiety provoking systems when you are already old and tired.

He has a very basic plan compared to many people. I have never asked for more funding as I provide

many hours to support my son. With his current plan this works okay. He has already been affected by

the spending cuts to NDIS services introduced in August 2024 by the Right Honourable Bill Shorten. If

his funding were to be further cut or if we were to be put under more pressure than we already are, it

could end very badly for both my son and for myself.

For many decades my son has been a patient of the state mental health services, most of these years

as an involuntary patient. He has had several hospital admissions due to adverse circumstances and

has been traumatised as a result.

The medications used to contain his symptoms have lead to both chronic health conditions such as

diabetes and years of social isolation as he has never attained a full remission of his symptoms

He has not been able to develop lasting friendships or other meaningful connections. Consequently, his

self esteem has continued to decline, as he continues to be excluded from meaningful life events and

the usual milestones that occur throughout one’s life.

I am in daily contact with my son and assist him to take his prescribed medications, in order to maintain

his current level of wellness. During the hours that I am with him, I have observed him in regular

Submission 1968

distress and, particularly since COVID 19, a decrease in his confidence and more pronounced social withdrawal. When I have mentioned this to his psychiatrist, the response has been that his condition is degenerative.

He looks forward to his support workers, including the Occupational Therapist, and without them he would have no other conversations, except me. The OT has extensive mental health experience and is therefore able to work within a therapeutic context, understanding the impact of his persistent psychotic symptoms. She is working towards increasing his independence, which gives me hope since my ageing is likely to have an impact on what I can provide into the future.

Social exclusion and stigma have been imposed on him due to inadequate services being available over the years, and the few services that were of some help were shut down. This attitude and continued exclusion has served to reinforce an internalised sense of worthlessness. I know when he was attending his guitar making workshop and his art group he was beginning to develop a better sense of self. In his words, he said that “he felt that he was no longer good for nothing” These workshops no longer exist and it has now been many years since the state psychosocial services closed them down. Even if they were to reopen, which is unlikely, I can’t imagine that he would be able to engage in a group now that it has been so long since his last engagement.

He has had the same support workers and OT for several years due to the NDIS “choice and control”. These workers are committed to him and without them his life would be very empty. They provide him with some kind of life and some level of engagement. This is not the life that we had hoped for but it is something and it is valued by him.

Knowing that he is not totally reliant on me for support, is a great help. My hope is that the social phobia that has developed may be remedied in time and some confidence restored. This will not happen if his regular people are taken away and he is forced to engage with the state funded services that have always let him down.

Unfortunately, he is in an age group where there has never been much in the way of state mental health support. When he was young and he had his first onset of psychosis, he was not eligible for the intensive youth mental health services that are now available. As time progressed and his symptoms persisted, he has not received good mental health support or psychosocial services. In fact the psychosocial service that he agreed to engage with were quite traumatising and he would not ever engage with these state funded organisations again.

This is why I am dreading the proposal by the Labor government to divert people to the states for support. It has never been suitable for my son and certainly the choice and control the NDIS is providing him with fosters a better sense of self, through familiar, regular and committed workers.

Submission 1968

These workers have stayed with him for many years and they are the closest thing to friends or family that he has, apart from me. I am aware that some people may benefit from State run services but not everyone. NDIS participants are a diverse group of people. Some people already engage psychosocial organisations, such as MIND for their NDIS supports and so a transition to the State would have less impact as they may retain their existing support people. This is not the case for my son.

Unfortunately, my son has not been able to work or study since his psychotic breakdown. Previously, his had a job, travelled and went to university. In the past he has made several attempts to return to university, however, he has not been able to sustain this due to his disability and cognitive decline. The Occupational Therapist and support workers continue to provide the support that enables him to maintain some of his skills. I am very grateful that the NDIS funds his supports. This enables him to work towards maintaining some skills and alleviating his social isolation.

Nathaniel has no friends or family apart from myself. Having these constant committed and familiar people in his life provide continuity and connection which would otherwise not exist for him.

It is a great comfort for me to know that I don’t need to worry as much, knowing there are other people supporting his well-being. It is also a comfort for me to know that I am not totally alone in dealing with what can be a very unpredictable and stressful situation, as a loved one’s psychosis can often be.

I hope you can represent the concerns I have that will impact on my son as an NDIS participant and me as an ageing carer.

Yours sincerely